Telotristat Ethyl (XERMELO) – an oral treatment for Carcinoid Syndrome Diarrhea not adequately controlled by Somatostatin Analogues
Republished and reformatted and reviewed 1st September 2024. Original published 31st March 2016. What is Telotristat Ethyl?Telotristat Ethyl is a significant introduction to the treatment of Carcinoid Syndrome diarrhea. It's the first addition to the standard of care in more than 16 years and the first time an oral syndrome treatment has been developed. The drug was previously known as Telotristat Etiprate but was changed to Ethyl in Oct 2016. 'Etiprate' was previously a truncation of 'ethyl hippurate'. The brand name is XERMELO® Who is the drug for?The drug may be of benefit to those whose carcinoid syndrome diarrhea is not adequately controlled by somatostatin analogues…
Neuroendocrine Cancer: I Can
Opinion. Most people with an incurable Cancer will go through both good and bad periods. I quite liked a quote by a fellow patient who described that as the 'ebb and flow' of living with cancer and said the flow would always return at some point. I also liked a quote from a fellow blogger whose blog catchphrase is "Having a bad day shouldn't mean having a bad life". I don't like playing the victim so I'm just trying to make my new normal ..... normal! And I make no apologies for my approach. So, when I wrote my blog post "Living…
Let’s be clear about Neuroendocrine Tumours – it’s a cancer!
Dear ReadersAnother week and another discussion about 'benign vs malignant' in my group. Let's put that into context and dispel one big myth. I write many blogs but one thing I always emphasise is the heterogenous nature of something called Neuroendocrine Neoplasms. That is a 'catch-all' term for both well differentiated Neuroendocrine Tumours (NET) and poorly differentiated Neuroendocrine Carcinomas (NEC). Notwithstanding the fact that there is a Grade 3 NET nowadays, the former is often described as 'slow-growing or 'indolent' in behaviour and the latter is almost always faster growing and a more aggressive cancer. NEC is also frequently said…
Small Intestine Neuroendocrine Tumours (SI NETs): To cut or not to cut?
Updated 25th August 2024 to add data on scenarios of liver and peritoneal metastases, plus a review of the Influence of Lymphatic, Microvascular and Perineural Invasion on Oncological Outcome in Patients with Neuroendocrine Tumors of the Small Intestine. It also incudes links to the European Neuroendocrine Tumor Society (ENETS) 2024 guidance paper for the management of well-differentiated small intestine neuroendocrine tumoursSmall Intestine Neuroendocrine Tumours (SI NET) are one of the most common types of Neuroendocrine Cancer, and also one of the most challenging to diagnose and then treat. Patients can have a very good outlook even when presenting with metastatic disease. …
Neuroendocrine Cancer: Glossary of Terms
Welcome to my Neuroendocrine Cancer Glossary of Terms list providing a source of meanings for acronyms and medical terms, all sourced from top Neuroendocrine Cancer and general cancer sites. How to use this database:1. If your term begins with an A, click on A to find all terms beginning with A. Select your terms beginning with A from the filtered list.2. For numerical terms (e.g. 5HIAA etc), please click on the hashtag (#) symbol in the A-to-Z strip.3. The term definition including acronym or abbreviation will be given in full along with any of my published articles containing that term as…
Clinical Trial: Triapine and Lutetium Lu 177 Dotatate for Neuroendocrine Tumors
Clinical Trial: Triapine and Lutetium Lu 177 Dotatate for Neuroendocrine TumorsUpdated 31st July 2024 to add Phase 1 results and info regarding Phase 2. Clinical Trial: Triapine and Lutetium Lu 177 Dotatate for Neuroendocrine Tumors - What is PRRT?I'm guessing most of my readers know what Peptide Receptor Radiotherapy (PRRT) is. But for those new to this field, read more hereWhat is Triapine?Triapine is a ribonucleotide reductase (RNR) inhibitor, I.e. it helps repair DNA. When I research this drug, I can see it is used in numerous examples of clinical trials in an anti-cancer setting alongside radiotherapy and chemotherapy, in many cancers.Triapine in…
Lanreotide for Lung NETs – SPINET Clinical Trial
Reviewed and updated 30th July 2024. Phase III trial data update. Update 30th July 2024. This trial had a low particpation repsonse. Experts cited the main reason was the increasing use of SSAs for Typical and Atypical Lung NETs in clinical practice; as such, patients were reluctant to enroll in this study, with the risk of receiving a placebo, when they could access the active treatment with a prescription. The above is unfortunate but perhaps the wording of some approvals caused confusion about scope. Together with pragmatic compassionate use in cliniclal practice this has perhaps had an adverse affect in…
A Neuroendocrine Cancer diagnosis: I didn’t even feel ill
I talk often about my diagnosis but not about an 'incident' which occurred almost immediately prior to being formally told. I was well into the 'diagnostic phase', having had all sorts of tests including a liver biopsy. I vividly remember thinking these tests were a 'nuisance', I was far too busy and I didn't even feel ill. In hindsight, I was fortunate to have had such a thorough bunch of physicians who diagnosed me with metastatic Neuroendocrine Cancer in about 6 weeks 'flash to bang'. I intentionally use a phrase associated with 'quick' because in the world of Neuroendocrine Cancer, 6 weeks is 'warp…
Neuroendocrine Cancer: The Perfect Storm
The Perfect Storm of Neuroendocrine Cancer by Ronny Allan, featured by Neuroendocrine Cancer UKAs featured by Neuroendocrine Cancer UK (formerly NET Patient Foundation)It's well known that Neuroendocrine Cancer can often be a very difficult to diagnose condition. However, what is less well known is the impact it has on those who are diagnosed. I'm one of the lucky ones, even though I still ended up with distant metastases. It does feel odd to say that having distant metastasis is lucky!I consider my diagnosis to have been incidental as they were not investigating cancer - I suspect that's the route for…
Alcohol – the NET Effect
Opinion. First published in January 2016. Social Media is currently full of 'Dry January' articles and of course many charities will benefit as people will be motivated if they are abstaining from alcohol for a good cause. Nothing wrong with that and no doubt some individuals will also see it as a way to cut down or at least lessen the effects of a very wet December! I've never been a big drinker but I do like the odd beer now and then. When I was diagnosed with metastatic Neuroendocrine Tumours (NETs), I hadn't really thought much about how this might affect my body. It…
Neuroendocrine Cancer is not a ‘type’ of another Cancer ….. PERIOD!
I first published this blog post after the dust settled on the media coverage of the death and funeral of Neuroendocrine Cancer patient Aretha Franklin. I was saddened by the death of this icon of the music industry but more determined to speak out about the need for our community to review the strategy for how we explain the nomenclature of Neuroendocrine Cancer to outsiders including the media, and incredibly, including doctors.About 95% of the articles I read about Aretha Franklin stated she had Pancreatic Cancer. Only a few quoted her physician who clumsily said "Pancreatic Cancer of the Neuroendocrine…
Poker Face or Cancer Card?
Before I was diagnosed, I had my share of illnesses. Fortunately, many of them were the routine stuff that most people tend to get from time to time, and most did not stop me from getting on with whatever I needed to do. I served in the military from age 16 until 45 – a long time! On only two occasions during that 29-year period, did I involuntary visit a hospital: aged 16 having been knocked out at boxing (you should have seen the other guy!) and aged 39 after falling off a vehicle (in my defense it was really…
Road ahead closed – Bowel Obstructions
OK - we've gone through diagnosis; we've gone through treatment and now we need to live with the consequences of cancer and its treatment. Not a day goes by when I don't feel some twinge or some minor pain, and I think 'what was that?'. Fortunately, many things can just be day-to-day niggles or in my case, the perils of getting older! The natural tendency is to think your cancer is causing these things.... easy to say, but very often not easy to prove. However, for Neuroendocrine Tumour (NET) patients who have had surgery, anything that seems like a bowel…
Did you hear the one about the constipated NET patient?
In my neck of the woods, "did you hear the one about the ........." is normally a precursor to a witty comment, or a joke. However, constipation for NET patients is not actually funny - read on. Certain types of Neuroendocrine Cancer are very heavily associated with diarrhea, either as a symptom of one of the NET Syndromes (yes there is more than one .....); or as a result of surgery or certain other treatments. Occasionally, these symptoms and side effects can all combine to make it quite a nasty and worrying side effect. I must admit to being surprised to…
“What are you doing this afternoon”
On 8th July 2010, I was sat in front of a secondary care consultant. I asked specifically for this consultant for two reasons, firstly, he carried out a colonoscopy some 20 months previously which turned out to be negative. Secondly, my GP had referred me to the iron deficiency anaemia clinic, and they wanted to do ….. a colonoscopy. I changed that plan because this "non-issue" was dragging on; quite frankly I wanted it to be resolved quickly, and I wanted it to be resolved in my favour - after all, in my head, I wasn't actually ill..... two months…
Neuroendocrine Cancer – the diarrhea jigsaw
Reviewed and updated 5th July 2024Diarrhea can be a symptom of many conditions, but it is particularly key in Neuroendocrine Tumour (NET) Syndromes and types, in particular, so called Carcinoid Syndrome but also in those associated with various other NET types such as VIPoma, PPoma, Gastrinoma, Somatostatinoma, Medullary Thyroid Carcinoma.Secondly, it can be a key consequence (side effect) of the treatment for Neuroendocrine Tumours and Carcinomas, in particular following surgery where various bits of the gastrointestinal tract are excised to remove and/or debulk tumour load.There are other reasons that might be causing or contributing, including (but not limited to) endocrine…
The Heterogeneity of Neuroendocrine Neoplasms
If you read any authoritative source on this cancer, it will normally begin with "Neuroendocrine Neoplasms (NENs) are a group of heterogeneous tumours .............". The term heterogeneous means diverse in character or content; or a structure with dissimilar components or elements. This is not surprising as these tumours are found in Neuroendocrine cells throughout the vast majority of the human anatomy.And yet, when you look at many hospital/healthcare sites, advocate organisation sites, and cancer information sources not maintained by Neuroendocrine Cancer scientists or specialists, you might start to think there is just one big type of NET and only one…
The 50 shades of Neuroendocrine Neoplasms
If you read any authoritative source on this cancer, it will normally begin with "Neuroendocrine Neoplasms (NENs) are a group of heterogeneous tumours .............". The term heterogeneous means diverse in character or content; or a structure with dissimilar components or elements. This is not surprising as these tumours are found in Neuroendocrine cells throughout the vast majority of the human anatomy. And yet, when you look at many hospital/healthcare sites, advocate organisation sites, and cancer information sources not maintained by Neuroendocrine Cancer scientists or specialists, you might start to think there is just one big type of NET and only…
Phase 3 CABINET Clinical Trial – Cabozantinib (Cabometyx) for Advanced Neuroendocrine Tumours
BREAKING NEWS - 6th August 2024 Exelixis Announces U.S. Food and Drug Administration (FDA) Accepted the Supplemental New Drug Application for Cabozantinib for Patients with Advanced Neuroendocrine Tumors.Exelixis Announces U.S. Food and Drug Administration (FDA) Accepted the Supplemental New Drug Application for Cabozantinib for Patients with Advanced Neuroendocrine Tumors– The FDA assigned a Prescription Drug User Fee Act target action date of April 3, 2025 –– Application is based on results from the phase 3 CABINET pivotal trial, in which cabozantinib provided a statistically significant and clinically meaningful improvement in progression-free survival versus placebo –Exelixis, Inc. (Nasdaq: EXEL) today announced that its…
Neuroendocrine Cancer: No one gets it until they get it!
Over the years of my advocating, I've tried to explain Neuroendocrine Cancer to many people outside the community. Some 'get it' but many don't. Most understand 'Cancer', but they have real difficulty understanding 'Neuroendocrine'. Despite how hard I try, I can see that some of them just don't get it! I told someone I had a primary in the small intestine once, they said "oh you have bowel cancer then?" - NO! One of the challenges of explaining Neuroendocrine Cancer is the sheer complexity and spectrum of types. It's a heterogeneous group of cancers ranging from some quite indolent versions…
Neuroendocrine Cancer – were you irritated by your misdiagnosis?
Look on any site about Neuroendocrine Tumours (NETs) and you'll find the term IBS (irritable bowel syndrome) frequently mentioned. That's because it's a common misdiagnosis for many before being formally diagnosed with NETs. I see it mentioned on my site a lot, often by people who are quite irritated (pun intended) by a previous diagnosis which perhaps should have led to their actual diagnosis of NET. But what exactly is IBS, why is it such a common misdiagnosis for many NET patients and how can these misdiagnoses be prevented or reduced in future? In preparation for writing this blog post, I…
Neuroendocrine Cancer: Those who know, know!
Over the years of my advocating, I've tried to explain Neuroendocrine Cancer to many people outside the community. Some 'get it' but many don't. Most understand 'Cancer', but they have real difficulty understanding 'Neuroendocrine'. Despite how hard I try, I can see that some of them just don't get it! I told someone I had a primary in the small intestine once, they said "oh you have bowel cancer then?" - NO! One of the challenges of explaining Neuroendocrine Cancer is the sheer complexity and spectrum of types. It's a heterogeneous grouping of cancers ranging from some quite indolent versions…
Neuroendocrine Cancer – not average, just mean
Most people have perceptions of cancer in their heads, fairly fixed perceptions too. They think about all the stuff they see daily on TV, in the main press, and people they know. The big cancers set the scene. Most doctors know about big cancers. They also know how to treat them, many of them have a fairly fixed regime of surgery/chemotherapy/radiotherapy. Many survivors will have side effects of their treatments, e.g. perhaps temporarily losing their hair. More people are now surviving these cancers and many will be declared disease-free or placed into some sort of remission status (no evidence of…
Let’s talk about living with NETs
Snoopy has a point Opinion. There's a frequently asked question on certain forums along the lines of "how will I die of my Neuroendocrine Cancer?". I also see it occasionally in a list of internet search terms that led to a hit on my blog site (I don't know who searched, just that this search term led to my site being viewed). I just hope they found this post! Personally, I find it slightly unsettling, although I can understand why certain people might ask. I accept it as a question, but I believe there are times and places for it…
Metastatic Neuroendocrine Tumours – Incurable but treatable
Metastatic Neuroendocrine Tumours - incurable is not untreatable. When I was being officially told I had advanced and incurable cancer, I did what most people seem to do on films/TV ..... I asked "how long do I have". The Oncologist started off with the worst case and that must have been quite a shock because for a few moments after that, I heard nothing - my brain was clearly still trying to process those words - I wasn't even feeling unwell! The really important bit I missed was him go on to say "...but with the right treatment, you should be able…
Neuroendocrine Cancer Nutrition Series Part 4 – Amines: Food for Thought?
Neuroendocrine Cancer Nutrition Series Part 4 – Amines: Food for Thought? Reviewed and updated 23rd January 2024 Background Nutrition is an important subject for many cancers, but it can be particularly important for many Neuroendocrine Cancer patients. When I started writing my nutrition series (listed below), I said that my intention is not to tell you what to eat, even though that might be a challenge for many, and this theme continues. The issue with Nutrition and Diet, in general, is that it's very individual and what works for one may not work for another. Often the the best diet…
Ignore this post about Neuroendocrine Cancer
Actually, you must share it widely, people out there will have this disease and need a diagnosis. People already out there with a diagnosis and want more awareness - so go on, ignore the post title and share it! When I was diagnosed, I wasn't feeling ill. In hindsight, I now know some of the signs were there, I just put up with them. Neuroendocrine Cancer had laid a trap for me, and I fell right into it. You see, Neuroendocrine Cancer can be very quiet and unobtrusive. It also plays the 'long game' and will sometimes take years before it's finally…
Living with Cancer – Turning points
In 2014, Chris and I completed the 84-mile route of 2000 year old World Heritage site of 'Hadrian's Wall' in Northern England. Some people saw this is a charity walk and a chance to make some money for a good cause. It was. However, it was MUCH MORE than that. Much much more. A few months before this trek, I had come to a crossroads and I was unsure which direction to go. That anguish and a thousand other things were contributing to a degradation of my overall health, it felt threatening. I was not that long out of the…
A First-in-Human Phase I Trial With Antibody Drug Conjugate ADCT-701 in Neuroendocrine Tumors and Carcinomas
What is the objective of this trial? To test a new drug, ADCT-701 (an Antibody-drug conjugate (ADC)), in people with Neuroendocrine Neoplasms (NENs). The eligibility extends to al adults aged 18 and older with NENs. It is listed in the NIH database under clinical trial identify number NCT06041516 (Reference 1 below). What are Antibody-drug conjugates (ADCs)? Antibody-drug conjugates (ADCs) are innovative biopharmaceutical products in which a monoclonal antibody is linked to a small molecule drug with a stable linker. Most of the ADCs developed so far are for treating cancer, but there is enormous potential for using ADCs to treat other…
I bet my flush beats yours?
Background Neuroendocrine Tumours (NETs) can sometimes present with one or more vague symptoms which occasionally results in a lengthy diagnostic phase for some. Sure, there can be issues with doctor experience and knowledge that can add to the problem. However, some people do present with multiple vague and confusing symptoms and some people have comorbidities that have similar symptoms. Textbook diagnostics just don't make sense, sometimes even when the doctor suspects a NET i.e. classic symptoms of 'something' but with negative markers for NETs. Clearly, those are extreme cases and just like other complex diseases, diagnoses of NET can be…
Other people get cancer, not me
I talk often about my diagnosis but not about an 'incident' which occurred almost immediately prior to being formally told. I was well into the 'diagnostic phase', having had all sorts of tests including a liver biopsy. I vividly remember thinking these tests were a 'nuisance', I was far too busy and I didn't even feel ill. In hindsight, I was fortunate to have had such a thorough bunch of physicians who diagnosed me with metastatic Neuroendocrine Cancer in about 6 weeks 'flash to bang'. I intentionally use a phrase associated with 'quick' because in the world of Neuroendocrine Cancer, 6 weeks is 'warp speed'.…
Neuroendocrine Neoplasms – not as rare as you think
UPDATE AS AT 5th OCTOBER 2025 - USA - Prevalence of Neuroendocrine Neoplasms breaches the Orphan Disease threshold for the first time (officially)In this cross-sectional study evaluating 145,477 NEN cases in the US, age-adjusted incidence rates increased 5.2-fold between 1975 and 2021, with an annual percentage change of 3% between 2000 and 2020, and the 20-year limited duration prevalence projected in the US population on January 1, 2021, was 243 896. Survival for all NENs improved, including for patients with distant-stage gastrointestinal and pancreatic NENs. And even this figure is understated as they have excluded some Neuroendocrine Carcinomas from the list…
Neuroendocrine Cancer – early diagnosis, not early misdiagnosis?
Orginal post - 25th Nov 2014.The papers and social media seem to be full of awareness and early diagnosis articles this month. This coincided with World Neuroendocrine Cancer Day on 10 Nov and Pancreatic Cancer day on 13 Nov. Social media was, therefore, buzzing with messages from organisations supporting and advocating for both of these cancer types. These issues also made it to the conventional media outlets of newspapers, radio and television. Last week I watched a clip from the UK national news, where 7-year survivor of Pancreatic Cancer Ali Stunt was telling the nation about the top 3 symptoms of…
Neuroendocrine Cancer: Fibrosis – an unsolved mystery?
What happened to me?Since I was diagnosed in 2010, I've always known about a fibrosis issue in my retroperitoneal area. It was identified on the very first CT scan which triggered my diagnosis. Here's how the radiologist described it - "There is a rind of abnormal tissue surrounding the aorta extending distally from below the renal vessels. This measures up to 15mm in thickness". Followed by a statement saying that it was "almost certainly malignant". The second and third scans would go on to describe as "retroperitoneal fibrosis" and "a plaque-like substance". Interestingly the fibrosis itself does not appear to…
Neuroendocrine Cancer – a difficult jigsaw
A few years ago, I received a request from a reader asking if I could write an article listing all the symptoms experienced by a Neuroendocrine Cancer patient and how to sort out what is and what isn't associated with NETs.Although I chuckled and raised an eyebrow at the request, inside I was genuinely humbled that someone thought I was capable of achieving this herculean task. I actually gave it quite a bit of thought to the point of compiling a matrix of types of NET, main symptoms, cross-referenced with the symptoms of the most common reported comorbidities/secondary illnesses. After…
Neuroendocrine Cancer? – 10 questions to ask your doctor
On the day I was diagnosed, I hadn't really thought about questions, the only one I actually remember asking was "how long do I have left to live" (I watch too many movies!). On the day of diagnosis and period beyond, people tend to feel emotions of shock, denial, anger, and sadness, before going on to accept their situation. Yes, I 'googled' but not a great deal really - although some things I found did frighten me. I wish I had found this article way back then. As things progressed in the weeks after 'D-Day', I started to work out…
Neuroendocrine Cancer: Beware But Be Aware
An awareness post from Ronny Allan BEWAREThere are a lot of scary diseases in this world. Take the lesser-known type of cancer that infiltrated my body for example - Neuroendocrine Cancer. Not only is it scary but it's also cunning, devious, misleading, and double-crossing. It likes nothing better than to play tricks on you.It will grow in your body without you knowing. It finds places to hide, mainly the small intestine, appendix, lungs, stomach, pancreas, rectum, and a host of other places. It can be fiendishly small to avoid being seen. Once it's established in the primary location (....or locations),…
“You must be doing OK, you’ve not had chemotherapy”
If there's a word which is synonymous with cancer, it's chemotherapy. It's what most people have in their mind when they are talking to a cancer patient...... 'have you had chemotherapy' or 'when do you start chemotherapy'.I was nonchalantly asked by a friend some time ago 'how did you get on with chemotherapy' - he was surprised to hear I hadn't had it despite my widespread disease. Cue - lengthy explanation! I wasn't annoyed by the question; I just think people automatically assume every cancer patient must undergo some form of cytotoxic chemotherapy. If you read any newspaper article about cancer,…
Surgery for NETs – Chop Chop
May 2024. a refurbish from some of my early work in 2015. I'm fairly sure not a lot has changed in surgery over the years. At the end of 2014, I was feeling pretty good celebrating 4 years since my first 'big' surgery in 2010. It prompted me to write an article Surgery - the gift that keeps on giving. In that particlar article, I really just wanted to say I was grateful for the early surgical treatment and as I was just about to spend another Christmas with my family, I was reminiscing what a wonderful gift it was at the time. Other…
I’m only as good as my last scan
"I'm only as good as my last scan". I once received this comment in response to one of my posts. I thought it was a very pragmatic thing for someone to say. A NET patient under surveillance has regular tests at determined intervals but the one that is most likely to spot disease progression, stability or regression is a scan. Markers such as (say) Chromogranin A (CgA) or 5-HIAA are clearly useful (for me) but in an ongoing surveillance scenario, they alone would not be used as a firm declaration of progression, stability or regression. Every picture tells a story…
Neuroendocrine – what’s that?
I once met some fellow cancer advocates and the conversation turned to what inspired us to ‘do what we do’. When it came to my turn as the only Neuroendocrine Cancer patient, I was already prepared to regurgitate my usual 'spiel'. As sometimes happens, a listener queried me with the words "Neuroendocrine - what's that?". Another focused on 'Neuro' enquiring whether my nervous system or my brain had somehow become cancerous. Deja vu - here we go again! Two days later, I was speaking to one of my online friends who was having similar problems explaining this cancer to family and…
The trouble with the NET (Part 2) – Alternative Therapies – what’s the harm?
But it works, I read it on the internet! “But it works… I read it on the internet!” You may remember my article entitled The trouble with the NET (Part 1) which was a lighthearted but still serious discussion about the dangers of self-treatment on the internet. Linked to that blog was a very popular article written by the scientists at Cancer Research UK debunking some cancer myths which seem to regularly patrol the NET and social media. Many well meaning people will send you articles they saw on the 'NET' about this and that treatment which claims to cure…
Colonoscopy Comedy
Last year I wrote a series of articles on the 'coping' side of cancer, one of which was about still being able to have a laugh. This was my way of saying no matter how tough life is, you need to stay positive and maintain your sense of humour. When I think back to some of the treatments I've had, I sometimes have a little laugh even although I wasn't laughing at the time! My favourite 'treatment laugh' is the 'suppository story' which occurred in hospital shortly after my first major surgery - it wasn't funny at the time, but…
From Whipple to Waikiki by Jerry Chezick. Surf’s up!
An essay by Jerry CrezickJerry is a Pancreatic Neuroendocrine Tumor (NET) patient recovering after a Whipple operation carreid out early 2022. He soon realised he had a big challenge on his hands. Read his story of recovery helped by learning to surf! First posted in my private Facebook patient support group. Gerry kindly agreed to let me post here. Honest, open and inspiring stuff"Finally I realized, I had to become the World Expert on MY Body"I've recently passed the 2-year anniversary of my Whipple.About 9 months before, I experienced a total knee replacement and figured, if I could endure that…
The Human Anatomy of Neuroendocrine Cancer
OPINION. Sometimes when I'm searching for cancer information, I'm presented with a 'picklist' of types which mostly tend to be anatomy based. I do find it annoying when I cannot find my own cancer on the list .....some respectable organisations are just not as up to date as they should be! Neuroendocrine Cancer patients and advocates then have to shout quite loud for recognition and understanding.One of the key facets of Neuroendocrine Neoplasms (NENs) is that they are not tied to a particular part of the human anatomy. Unlike (say) lung cancer, where the primary is in the lung, or breast…
Neuroendocrine Tumours (NET) – benign vs malignant
Reviewed and Updated 13th March 2024 One of the most controversial aspects of Neuroendocrine Neoplasms, in particular low grade Neuroendocrine Tumours (NETs), is the 'benign vs malignant' question. It's been widely debated and it frequently patrols the various patient forums and other social media platforms. It raises emotions and it triggers many responses ..... at least from those willing to engage in the conversation. At best, this issue can cause confusion, at worst, it might contradict what new patients have been told by their physicians (....or not been told). I don't believe it's an exact science and can be challenging for a NET…
The Classification, Grading and Staging of Neuroendocrine Neoplasms (incorporating WHO 2022 classification changes)
- Updated 11th March 2024 - This section of my website has been published since 2015 but the most recent update to the World Health Organisation (WHO) Classification of Neuroendocrine Neoplasms is so significant, so gamechanging, that I have re-released the updated text. You may see these important publications called 'Blue Books'. Words are very important in Neuroendocrine Neoplasms (NENs). Nomenclature has important meaning and context more than most other cancers due to the heterogeneity of this group of neoplasms. Grade and Stage are two factors inextricably linked to the nomenclature and while there have been less changes in these…
Clinical Trial of Paltusotine, an oral somatostatin analogue for the Treatment of Carcinoid Syndrome
Update 25th September 2025 - CrineticsCrinetics Announces FDA Approval of PALSONIFY™ (paltusotine) for the Treatment of Acromegaly in Adults- September 25, 2025Read more - click here. Learn more about PALSONIFY BY clicking here. Note: Approval of somatostatin analogues for acromegaly normally precedes approval for NET. UPDATE 14th March 2024Results from Paltusotine CarcinoidSyndrome Open Label Phase 2 Study, A Randomized, Parallel Group Study to Evaluate the Safety, Pharmacokinetics, and Dose Response of Paltusotine Treatment in Subjects with Carcinoid SyndromeHeadline:EFFICACY FINDINGS: Rapid and Sustained Reductions in Patient SymptomsSAFETY: Once Daily Oral Paltusotine Showed Positive Results inCarcinoid Syndrome PatientsEfficacy and safety findings support progressing to a…
There are no perfect answers about an imperfect cancer
If you read any authoritative source on this cancer, it will normally begin with "Neuroendocrine Neoplasms (NENs) are heterogeneous tumours .............". The term heterogeneous means diverse in character or content; or a structure with dissimilar components or elements. This is not surprising as these tumours are found in Neuroendocrine cells throughout the vast majority of the human anatomy.This represents a challenge for regular healthcare professionals but also for Neuroendocrine Neoplasm specialists who are answering many questions asked by patients and their loved ones on a daily basis. I very much suspect this challenge is the same for many types of…